How to Get Tested for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Artist: Zeraph Dylan Moore

๐ŸŒธ The Hummingbird Foundation website includes a: Short list of names of tests, plus a longer summary of each test, plus an even longer detailed explanation of each test.

๐ŸŒธ The Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners includes a long list of tests. On page 10 there is a worksheet that can be filled out by a doctor. This booklet is written for doctors, so it’s going to be difficult for us normal folks like us to understand.

๐ŸŒธ The Social Security Ruling for Chronic Fatigue Syndrome includes a list of tests that can be helpful for applying for disability. In addition, the ruling recognizes “any other laboratory findings consistent with medically-accepted clinical practice.” So, any of the other tests on this page also has the potential to be helpful. This ruling is for disability applications in the US. Most other references on this page are international.

๐ŸŒธ A lists of tests is available on the website for the Treatment Center for Chronic Fatigue Syndrome. They also publish a longer guide explaining tests in more detail.

๐ŸŒธ The IACFSME published an ME/CFS Primer for Clinical Practitioners that includes a long helpful list of tests.

๐ŸŒธ Katherine T Owen has compiled an excellent list and explanation of various Chronic Fatigue Syndrome tests on her blog Healing CFS/ME (keep scrolling down, the list is in the middle of the page). Includes special information on laboratory testing in the UK.

๐ŸŒธย The ME/CFS Roadmap for Testing and Treatment was created by an ME/CFS patient. It includes excellent, detailed information on testing and interpretation of test results.

๐ŸŒธย The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis includes a list of tests for ME, plus tests for related conditions that occur in ME patients.

๐ŸŒธ The two-day CPET test is used by some people in disability claims. What’s a CPET? How do I get one? Do I want one? Learn more about the CPET.

๐ŸŒธ If you have other conditions or impairments, you may wish to check out this list of how to Collect Medical Evidence for Other Conditions

Readers Report

๐ŸŒธ Many people with CFS and ME wind up testing “normal” on lab tests. Don’t worry if this happens. It doesn’t mean you are not sick. It just means science has not yet figured out how to fully test this condition. Many people are diagnosed based on symptoms and medical signs rather than tests.

๐ŸŒธ Which of these tests helped people the most? Glad you asked. Cort Johnson from Health Rising asked 800 people this question. Here is their list of Which Tests Helped the Most (click on “View results” to see what everyone answered).

๐ŸŒธ CPET tests are sometimes used to help with LTD (disability through your employer). Here’s How Dahlia Used a CPET to win disability through her employer. And here’s How Iris Got a CPET

๐ŸŒธ A tilt table test is a test used to document changes in blood pressure and heart rate for patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Some readers report that beta blockers or other medications can interfere with the test results.

๐ŸŒธ Some people who cannot get a tilt table test, instead try theย NASA Lean Testย (a “poor man’s tilt table test”). It does not require special equipment and any doctor can do it if they are willing. Some people have had success printing out the form and instructions, bringing it to their doctor, and requesting a special appointment to perform the test.

๐ŸŒธ One person reported success with an “L/P blood test, lactic acid to pyruvate ratio test”

๐ŸŒธ In addition to the list of tests, the International Consensus Criteria also includes helpful guidelines on symptoms and impairments from Myalgic Encephalomyelitis. Here’s How Colleen Used the ICC to Finally Get a Diagnosis that Fit

Updated May 2017.

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